National Data and Statistical Center for the TBI Model Systems.
Health and Function.
3425 South Clarkson Street.
Englewood, CO 80113-2899.
Principal Investigator: Cynthia Harrison-Felix, PhD.
Public Contact Phone: 303/789-8565.
Project Number: H133A110006.
Start Date: October 1, 2011.
Length: 60 months.
NIDRR Officer: Kenneth D. Wood, PhD.
NIDRR Funding: FY 11 $625,000; FY 12 $625,000; FY 13 $625,000; FY 14 $625,000; FY 15 $625,000.
Abstract: The Traumatic Brain Injury Model Systems National Data and Statistical Center (NDSC) provides innovative technologies, training, and resources to the Traumatic Brain Injury Model Systems (TBIMS). Building upon a comprehensive system of data management, communication technologies, and operating procedures that emulate the best practices of clinical research organizations, the NDSC increases the rigor and efficiency of scientific efforts to longitudinally assess the experience of individuals with TBI and advance TBI rehabilitation. NDSC has nine project goals: (1) maintain the TBIMS National Database (NDB) providing for confidentiality, quality control, and data retrieval capabilities, using cost-effective and user-friendly technology; (2) provide training/technical assistance to TBIMS on subject retention, data collection procedures, data entry methods, appropriate use of study instruments, and monitoring data quality; (3) provide knowledge, training, and technical assistance to TBIMS on culturally appropriate methods of longitudinal data collection and participant retention; (4) provide statistical/methodological consultation to TBIMS; (5) implement a mechanism for continued follow-up data collection from defunded TBIMS; (6) collaborate with Spinal Cord Injury and Burn Data Centers and the Model Systems Knowledge Translation Center (MSKTC); (7) coordinate on research projects of mutual interest with NIDRR-funded projects; (8) involve individuals with disabilities in planning and implementing the research, training, and dissemination activities, and in evaluating its work; and (9) identify anticipated outcomes that are linked to stated grant objectives. NDSC introduces recent innovations including public data access and reporting strategies; web-based data collectors training and certification system; technologies/resources to support the important work of the TBIMS committees, module studies, and special interest groups; advanced longitudinal analytic strategies, a Statistical Users Manual, and several proposed NDB analysis projects; new cultural competency resources and language translation services; collaboration with the MSKTC on a TBIMS exhibit and materials; a Technical Advisory Board; and new collaborative partnerships. The success of the project is assessed by five measurable outcome goals: (1) advance TBI rehabilitation by increasing the scientific rigor and utilization of the TBIMS NDB/Modules, as measured by an increase in the annual rate of peer-reviewed journal articles that cite the TBIMS NDB/Modules as the primary source of research data; (2) maintain the TBIMS NDB/Modules using cost-effective and user-friendly technologies as measured by user acceptance of new technologies/methodologies as indicated by annual customer evaluations; (3) ensure high-quality, reliable data in the TBIMS NDB/Modules by providing comprehensive technical support as measured by center quality support visit reports and data quality reports; (4) improve data collected from NDB participants of all racial/ethnic backgrounds as measured by an increase in the follow-up rate of minorities; and (5) enhance continuity of the TBIMS NDB by developing mechanisms/strategies for following participants enrolled by defunded centers as measured by improvement of follow-up rates of TBIMS NDB participants.
Descriptors: Brain injuries, Databases, Model Systems, Outcomes, Traumatic Brain Injury Model Systems.
Individualized Planning for the First Year Following Acute Rehabilitation Project.
The Ohio State University.
1166 Dodd Rehab Hospital
480 Medical Center Drive.
Columbus, OH 43210.
Principal Investigator: John D. Corrigan, PhD.
Public Contact Phone: 614/293-3802.
Project Number: H133A080023.
Start Date: October 1, 2008.
Length: 60 months.
NIDRR Officer: A. Cate Miller, PhD.
NIDRR Funding: FY 08 $854,780; FY 09 $854,881; FY 10 $854,469; FY 11 $853,685; FY 12 $854,475; FY 13 $ 0.
Abstract: This project conducts a Practice Based Evidence (PBE) study of individual differences in demographic characteristics, pre-morbid status, injury-related conditions, and medical course that differentially predict the effectiveness of rehabilitation interventions on functional independence, participation, and subjective well-being up to one year following traumatic brain injury (TBI). Incorporating data collected for the NIH-funded PBE study, this project focuses on acute rehabilitation, and on the recovery processes occurring after discharge from rehabilitation. PBE methodology studies naturally occurring differences in treatment practices in order to identify individual differences in treatment effectiveness. It allows a large number of intervention-by-impairment interactions to be examined, while individual patient differences, including severity of TBI and medical complications, are controlled. Data are collected at 10 TBI rehabilitation programs in the United States and Canada: Ohio Regional TBI Model System, Carolinas TBI Model System, New York TBI Model System at Mt. Sinai, National Rehabilitation Hospital, Shepherd Center, Intermountain Medical Center, Rush University Medical Center, Brooks Rehabilitation Hospital, Loma Linda University Rehabilitation Institute, and the Toronto Rehabilitation Institute. Research subjects are 2,315 consecutive, consenting patients admitted for rehabilitation of a moderate or severe TBI. Interviews occur at three months post-discharge and one year post-injury allowing for detailed characterization of change during the first year of recovery.
Descriptors: Acute rehabilitation, Brain injuries, Individualized planning, Statistics, Traumatic Brain Injury Model Systems.
Rehabilomics: Revolutionizing 21st Century TBI Care and Research.
University of Pittsburgh.
3471 Fifth Avenue, Suite 202.
Pittsburgh, PA 15213.
Principal Investigator: Amy K. Wagner, MD.
Public Contact Phone: 412/648-6666.
Project Number: H133A120087.
Start Date: October 1, 2012.
Length: 60 months.
NIDRR Officer: Leslie J. Caplan, PhD.
NIDRR Funding: FY 12 $430,100; FY 13 $430,090; FY 14 $430,100; FY 15 $430,100; FY 16 $430,100.
Abstract: This project provides comprehensive, multidisciplinary services for individuals with traumatic brain injury (TBI), and applies the principles of Rehabilomics to develop systems-based and best-practice approaches to person-centered care that maximally impact function and recovery. The project includes site-specific research exploring the relationship between dopamine system dysfunction following TBI and genetic variation in dopamine-related genes. In addition to contributing longitudinal data to the TBI Model Systems national database, this project conducts a rehabilitation technology pilot component for developing ecological momentary assessment tools for real-time symptom journaling and data collection tailored to individuals with TBI, infrastructure that critically links biomarkers, and other molecular signatures with assessments grounded in the International Classification of Functioning, Disability, and Health. In addition, the TBI Model System disseminates research findings in the region and nationally through seminars, presentations at professional and consumer meetings, publishing in professional and consumer journals, and collaboration with the Model Systems Knowledge Translation Center.
Descriptors: Best practices, Rehabilomics, Traumatic Brain Injury, Traumatic Brain Injury Model Systems.